A couple of months ago Theo attended a conference in Philadelphia. It was hosted by the Well Spouse Association – a not-for-profit group whose mandate is to support spouses of those with a chronic illness or disability. It’s an American organization that hosts an annual conference where the “well” spouse is invited to attend, participate or just listen to what others have to say.
As a “first timer” Theo was asked to give some feedback about the conference – instead they published his words as a complete article for their publication. Here is what he had to say.
My perspective on my situation has changed since the conference. While there, I felt a bit sheepish that my life seemed much ‘easier’ than most others, who have been caregivers for many years. And the IS [ill spouse] is often in more dire medical circumstances than my wife’s.
The weeks since the conference have allowed my thoughts to settle and my perspective has changed somewhat. I had yet to consider our future really, as all of our attention has been on immediate problems, but with her acquired greater independence I have time to think. My wife has paralysis from mid-chest down after being hit by a car while cycling two yrs ago, so our lives were changed instantly that morning in July. The wheelchair is her legs now and she has had no lasting cognitive impairment. With her rehab & recovery we are at a plateau, I would say, and my caregiving is not full time. Barring life’s unpredictable events I think we’ll be here for a couple of decades. My thoughts are about our aging (45ish now). My caregiving will undeniably increase again – as would happen if she breaks a bone or injures her shoulder, which seems to be a common concern with those with paralysis.
We live in rural southwestern Ontario (2 hrs north of Detroit) with pretty good rehab services within an hour’s drive. However there aren’t many people in our circumstances, meaning a family with 2 kids and a wife as IS. It’s typically males who have an SCI from a traumatic event, not women, and trying to connect with anyone, let alone a dad, is hard.
This is how I ended up at the conference. I knew I needed to find and talk to others; family & friends have been great/supportive but there are so many things I questioned or wanted to say but couldn’t share with them. Or, share effectively with them. I felt more and more isolated and I needed a (positive) way out. I felt that other caregivers would ‘get it’. At least, I really really really hoped they would. I saw that there were seminars on Intimacy with Your Partner and there was to be a Men’s Discussion Group too. Those two were a draw for me.
I was immediately put at ease there [at the conference] and as a first-timer slipped into the well-organized schedule. It was lovely to have no immediate responsibilities, have meals planned & catered. Sitting, talking and listening to other caregivers who, even with all of our differences, shared such a monumental task. I went to the session on The Thing You Cannot Say where, while in a room with 20+ others with music playing loudly and our eyes closed and ears covered we spoke aloud the silent thought we carry in our minds, but fear admitting or saying to our spouse, about our situation. We were then allowed to voice it to the room if we chose and it was then that I understood why gathering with others is so beneficial.
The whole group was understanding, non-judgemental, and supportive. Most did speak up about their lives and though the stories were often tragic and to me overwhelming, I felt at home, it felt okay. I got it. There are online and telephone supports but being physically together has such a cathartic effect. The weekend allowed me to be immersed in stories of sadness and despair or frustration but at the same time it was easy and I was finding a commonness with everyone. This couldn’t have come together anywhere else.
I would go again. Attending the conference has steadied me and I have gained some knowledge and some friends. I don’t view others’ situations as better or worse than mine anymore. The shitty days come and go for all of us, and that’s fine, it really is. – Theo Sawchuk, December 2017
I feel that we both learned a lot when Theo attended this conference, about our how relationship and our roles have morphed over the past two years. We know we have work to do – but we’re not shying away from it. I am thankful every minute of every day for the love, support and care that Theo has given to me since that day in July.
Here are some tips for caregivers (and friends of) from the latest Mainstay – the Well Spouse Association Newsletter.
Accept help – develop a list of ways that others can help you.
Set realistic goals & prioritize – it;s okay to say no.
Get connected, join a support group and seek social support.
Set personal health goals [personally I think this is so very important for the long term] and see your doctor.
Friend of a caregiver advice: Be supportive, listen, listen, and listen. Determine what you can do to relieve the stress of your friend. Ask how your friend the caregiver is doing because most people inquire about the care recipient.